Why I choose to tell my MS story

Since the birth of my blog, Sunshine and Moonlight, and even more-so since I used my weekly television segment, and two newspaper stories about my situation – to tell the world (or my microcosm of it) about my MS diagnosis, I’ve received some feedback from individuals. The comments have come from people close to me and from complete strangers. Some thoughts were solicited, while others were not. I felt as I begin my journey writing for HealthTalk to share with the loyal readers here why I choose (and it’s truly a personal choice) to tell my story.

Out of concern for me, some have questioned whether it was really wise to go public with my diagnosis, my symptoms, and my prognosis. I jumped on several message boards and chat rooms to observe other MS patients and their concerns with telling people about their diseases. It’s true that many MS patients fear being too open about their situations. Much like the concerns shared directly with me about my decision, other MS patients are often worried that others will pity them. They ponder whether their employers will continue to believe in their abilities in the face of possible cognitive difficulties, or the need to utilize more sick days than pre-diagnosis. Others worry that they will be judged harshly because they have MS. Still others are worried that they may lose out on future job opportunities if potential employers find out about their ailments – all valid concerns.

On the opposite end of the spectrum, I’ve received comments literally from across the world, encouraging me to spare no one and to continue to share my story. I had a complete stranger approach me at a local restaurant recently, to thank me for sharing my story on television. She said it was courageous and that she and her family were praying for me. I knew right then that I had made the correct choice when I was weighing whether to be silent or to speak.

I choose to tell my story for two main reasons. First, I think it is important for others with MS, whether newly diagnosed or those who have faced their own battles with the MonSter for years, to see that it’s possible to still be active in life. I want the general public to know that even though someone has MS, they can still be a viable member of a senior team of leaders in their business or organization. A multiple sclerosis patient can balance both a full-time job and a part-time passion. An MS patient can still be an active step-mother, wife, friend, colleague, blog writer, doctoral candidate and community activist. An MS patient can live a full life, filled with as many (if not more) rewarding opportunities than before her diagnosis.

But even more importantly, I choose to tell my story because I can. There is a man, from my home town in Erie, Pennsylvania, and his name is John Kanzius. John is the former owner of an ABC affiliate station, he’s an engineer, and now he’s a cancer research scientist. John has leukemia and when he was diagnosed he could have just come home to his wife, wrung his hands in worry and complained about his devastating chemo treatments. Instead, John decided to do something. That decision may just have found a cure for cancer (oh, and possibly also solved the country’s fuel problems at the same time). John may never be able to personally reap the benefits of the work that he has done. But he chose to do something that will someday possibly save the lives of millions. (For more on John’s story, see the links below).

I’m not an engineer, a medical researcher or a scientist – I never will be. But, I am a media personality, an educator, a writer and a community activist. I’ve chosen to use those skills, connections and experiences to spread awareness about multiple sclerosis. I’ve chosen to use my story to hopefully provide support to other newly diagnosed patients. My hope is that my story will help the caregivers, coworkers and friends of those with MS better understand the disease and how they can play an important role in their special person’s battle with the beast. My words, my own personal experiences, and the resources I can gather for others, are all I have to give. And this is why I choose to tell my story.

I look forward to engaging with the loyal readers of HealthTalk as we journey together.

-Kim

You can learn more about John Kanzius and his research by clicking the links below:

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ABOUT THE AUTHOR

Kim Fabrizio

Kim has spent more than two decades working in media and education. She is the education director for Public Broadcasting of Northwest Pennsylvania, an online writing coach for homeschooled students, and a...read more